The von Willebrand Disease Prophylaxis Network (vWD PN): Exploring a treatment concept.

The von Willebrand Disease Prophylactic Network (vWD PN) has been initiated to study the natural history of vWD bleeding, and to prospectively study the role of von Willebrand Factor (vWF) concentrate prophylaxis in vWD. Patients with all types of vWD in need of treatment with vWF concentrate will be enrolled into the study. Quality of life will be measured and safety and efficacy will be monitored at pre-determined intervals. Between February 2005 and July 18, 2005, 62 investigators from Europe and North America were participating in the vWD PN, and 61 have submitted census data. A total 5343 patients have been identified for enrolment, and of these, 991 patients were treated with plasma-derived products in the preceding 12 months, and 99 patients have received prophylaxis, predominantly for joint-related bleeds. The vWD PN aims to further elucidate the role of vWF concentrate prophylaxis in vWD and to identify patients most Likely to benefit from prophylaxis.